**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

waswondering not ignoring you, sorry, I don't have any very useful advice. I didn't lose my hair during chemo, but it thinned a lot and my scalp hurt. I think that is quite common with chemo hair loss. I sometimes put a cold gel pack on, but no idea if there are better solutions. I hope that the pain wears off quickly

Lily hope the blood transfusion perks you up and you have great holidays

Wondering mine was only sore as the hair fell out so hopefully it won't last too long for her,sleeping on a silk pillowcase is nice and gentle and she could try running a little moisturiser in

waswondering
I can't help over DM's scalp problem. I would contact the BCN for suggestions.
I had my head shaved and started wearing a wig as soon as the hair started falling out in large amounts. My hairdresser recommended me to use some gentle tanning lotion on my head and face which kept my scalp moisturised and made me look very healthy! This can be a disadvantage during chemo as it can be annoying to be told how well you are looking and what a great new hairstyle you have when you are feeling rather grim.

to lily low Hb levels aside, good to hear you are still doing well and off on lots of holidays. Hope you have a fab time :)

Hi Jarlin
We can all understand how you feel as we've been there too. A referral doesn't necessarily mean cancer nor does cancer mean a death warrant.
But at this stage we all jump to the worst conclusions. All you can do until you get a diagnosis (or more likely an all clear) is to keep busy and do not visit Dr Google (apart from trustworthy and updated sites such as Breast Cancer Care, MacMillan and Cancer Research).
And we are here for a hand hold! Don't be afraid to vent your concerns here.

Jarlin, hello and I'm sorry you are facing this. Recalls occur for several reasons, sometimes it's as simple as them not getting a good enough image. But you are bound to worry so I won't tell you not to.

I don't know about us being brave, I don't feel it. It's more a case of just having to her on with it. All normal things continue, as well as treatments and recoveries. We have our down times, it would be impossible not to. A year on I still can't quite believe its happened to me.

But thank you for posting, what you said about your mum being in her seventies, thirty years on from breast cancer is the very best thing I've read in ages.

I hope you have nothing to worry about when you go back.

It is so different now, do remember that. I doubt your mum would have had a mastectomy today, my diagnosis sounds very like hers and I just had a lump removed. There are also amazing new drugs to help prevent recurrence.

The whole experience, whilst terrifying and life changing, is very much patient centred. You can get as much or as little information and support as you like. I can't say I'd recommend it, but it is doable.

It must be difficult to forget how it was for her, but fortunately things have moved on.

MarthaCostello
Thank you for your kind words.
I am currently getting 2 types of hormones injected daily and have another check up on Monday, which will hopefully show a bunch of eggs ripening and we can organise a collection date. I think this will be my one shot at freezing some eggs before I start chemo.
I will have to try and tack down BsshBosh...
Still yet to have a PET scan but it's looking like I'll be getting Fullfox (I think its called?)

Anon, I'd think your team will recommend you to a good specialist for one of the many new combination therapies. We have people who have lived for years with secondaries near the heart/major blood vessels. And the newer combination therapies are showing great promise. I think a good team can keep this well under control for a good while...and even newer therapies come along fairly frequently now. If that helps.

Jarlin, the waiting bit for results is definitely the scariest for most people. I'm a bundle of nerves every time I go for re-checks, even nearly five years on. We know that only 1 in 10 breast lumps is cancer.
Even if it is breast cancer, you can't die from a lump in your breast. If that's where it is, they can get that with no problem. So 9 out of 10 breast lumps are removed/zapped/poisoned to death with chemo, and that's them done with.
So there's only about 1 in 100 lumps that turns out to be cancer AND really rudely behaved.

Luckily the technology these days is good enough that even the most rude of cancers can be made to behave for years, in many cases. No guarantees, of course.

So although it's scary, hopefully all will be well. Meantime, a whole board full of people who know how scary it is.

Waving to all. I know I don't do well for remembering the sociable bits. Peril of being autistic

an0n fingers crossed for you on Monday :) if you're worried about the procedure, it is completely painless. I was well sedated and had no symptoms afterwards. I got "morning sickness" from the jab (the final one they give before collection) so had to travel to the clinic with my head in a bucket, much to the nurses' amusement

That'll be FOLFOX, a combination of 5FU and oxaliplatin. There's some information on the Macmillan website about it here if you are interested. Their fact sheets are reliable and frequently updated.

I had the OX bit (oxaliplatin) and capecitabine, which is converted to 5FU in the body, so I expect the side effects are somewhat similar.

Jarlin sorry you've had to join us, fingers crossed you get an all clear. Good news that your mum is still around thirty years after treatment. Everyone reacts differently to diagnosis, but it's not really about bravery, there's no choice but to get on with things so that's what people do :) anyway, I hope you'll have good news

Hi all

Just found this thread and hope you can help!
I am 44 and was diagnosed with occult breast cancer in 2007 aged 36. Following lymph node removal and chemo, I have been healthy and cancer free. I now have annual check ups and will do so until I am at least 50. My next check up is in November.

Today I noticed how 'uneven' my breasts looked. The skin is puckered around my nipple. It's the same breast I had cancer in.
I really don't know if they've looked like this all these years or whether this is new.

Do I wait until November?

Gammon welcome :) do you have a breast cancer nurse? I would get in touch with them or with your GP and ask to see your surgeon. It is worth having it checked soon rather than waiting several months.

Hi Gammon
If I were you I would make an appointment with your GP - you don't want to worry through to November!

Thank you everybody! I don't have a nurse anymore, but I can ring the breast cancer unit and see what they say.

Hi all, just thought I'd check in as I've been away for a few days to the South -east, plus a trip to London to see a west end musical.

I've just about caught up all the news and 'met' all the new people.

gammon - I would make an appointment sooner then later, if only to put your mind at rest.

marlin - we're not all brave, but meddling through. Waiting for initial appointments, tests and results is quite difficult. When you have a treatment regime, it somehow is easier, as you go with the flow. Then I think it's hits you again afterwards what has happened.

As someone else said, the recall may be because the image isn't clear, or they have spotted a lump, but that lump could be a cyst, or if it is cancerous, then the chances of it being completely sinister is low.

Thank you to the poster who started this thread six years ago. I discovered three years ago, and came back to it recently. I have found it especially helpful this time( particular thanks to Marshy).

Big hi to everyone else. I have read so much ( three pages) so I'm a bit muddled with what's happening to who, but please have a biscuit from my Souvenir 'Devon biscuits' box.

I'll have a biscuit thanks river

Agree we are not all brave I know I'm not ! But there is no choice other than to get on with it, go through treatment and carry on looking after the kids, working and everything else. I still lie in bed and worry how long I've got left though

Hi An0nan, how did your check up go? Sorry that you are here. Hopefully they will get some good eggs from you.

Thanks for the biscuits Rivercam. :) Hope that you had a good holiday.

Hi Jarlin and Gammon.

Amberlight, your posts are always so hopeful and encouraging. Thank you.

Enjoyed my biscuit thanks River . Had my mx and lymph nodes removed on Friday. Had a skin sparing mx with an implant as need rads as well as chemo. Hopefully having a diep recon next year. Still in hospital but feel ok. The worse thing is the burning ache (nerves returning?) especially when trying to sleep any suggestions of help relieving that would be good? Should be going home later today which is fab X

staygold, hope you feel better soon. As I had axiillary clearance( though a lumpercomy not a mastectomy) I can understand the sensation you mentioned and you are right that it is most likely the nerves. There are a range of sensations that come after ( or simultaneously) from tingling to sensitivty and numbness in some areas. Have they given you painkilers? They seemed to help me that early on.
My aspiration culture showed no infection which is the good news, but I wasn't expecting the other item on the news bulletin today: something about an enhanced lymph node showing up with the contrast during the MRI in the affected breast and now they want to biopsy it on the morning of my first chemo dose Wednesday to check if it malignant or just a reaction to the fluid build up. There was talk of a 80% chance of it being malignant and 20% chance it is not. So what happens now I wonder. There was talk of the need to go ahead with the chemo regardless and then when the biopsy result comes in there may be a need to discuss a mastectomy as an option at some point.
I am dazed to be honest. They had told me the breast was ok following surgery and now this. I would have opted for a max had I known beforehand. Sigh.
So, now as well as feeling anxious about the chemo, I have this unexpected bit of info now. I need to clear my head and take things one at a time or I might as well implode.